Bioethics Forum Essay
Medical Aid in Dying and Organ Donation: Canada’s Autonomy Gap
In Ontario, Canada where we work and live, medical aid in dying, or MAiD, has been legal federally since 2016. Physicians can assist individuals in ending their lives if they have a “grievous and irremediable medical condition” that is causing unbearable physical or mental suffering. Bioethicists and policymakers have written widely about this process, pointing out the importance of respecting patients’ autonomy and reducing their suffering. And one of the most important aspects of the MAiD process in Canada is the respect for the patients’ wishes concerning organ donation.
MAiD patients can make decisions about organ donation without worrying that those decisions will be discounted. In contrast, people who die of all other causes do not get that degree of respect for autonomy. Their wishes are subject to the approval of loved ones and substitute decision-makers, who can choose not to donate their organs after they die. We believe that Canada is moving in the right direction with its respect for patient autonomy by allowing organ donation after MAiD, and that this respect should be granted to all patients.
The number of countries that allow MAiD is increasing, but only Belgium, the Netherlands, Spain, and Canada allow organ donation after MAiD. In Canada, whether to donate one’s organs is one of the decisions patients make in the extensive MAiD process, with thought and care going into each step. Physicians and hospitals ensure that there is informed consent, both for MAiD itself and organ donation. There are specific requirements to make sure there is no pressure or coercion. These requirements are important We as a society worry about pressure to donate, impact on a donor’s end-of-life experience and dignity, and respect for the person’s autonomy. And it is important to maintain public trust in the MAiD and organ donation processes, which we do by treating donors with respect, protecting their autonomy, and recognizing the sanctity of their life and their sacrifice. In fact, a recent study revealed that Canada has the world’s highest number of organ donors from MAiD patients.
But we should give the same respect to people who opt to be organ donors outside the MAiD process. Their organ donation decision should not be overridden by family members or other substitute decision-makers. Surrogate decision-makers can’t claim that they do not know the patient’s wishes: Ontario is one of several provinces that provides an online database for patients to record their advance directives with organ donation decisions, a huge step in the right direction. A patient’s clearly expressed and fully autonomous desire should not be subsidiary to that of a substitute decision maker and/or power of attorney.
It is not common for a family to go against a loved one’s wishes in Ontario—but it happens. Data from 2015 found that 20% of families overrode their loved one’s consent after the individual had passed away. We are left with an ethical tension: we aim to respect autonomy and minimize harm through MAiD, and yet, apart from MAiD, patients’ wishes around organ donation are not always respected. The wishes of those who die via MAiD should not receive more respect than the wishes of those who, for instance, choose to withdraw life support.
As health care clinicians, we see this discrepancy play out with patients who have kidney disease. The respect we have for our dialysis patients and their autonomy in end-of-life care is fundamental to our practice. For patients who want to withdraw from life-sustaining therapy, we help with advance care planning and allow them to make that choice with fully informed consent. However, when we discuss organ donation with someone on life support, including someone who chooses to withdraw life-sustaining treatment, we always reference the family’s involvement in the decision because we know that the patient’s decision is not final. There is a marked difference between the respect for the wishes of a patient who chooses to withdraw life support and a patient who chooses MAiD, even though both patients are essentially making the same decision—to end their lives. Patient autonomy is not being given equal consideration in these different circumstances.
We also see very sick patients waiting desperately for a kidney to become available. In practice, we cannot ignore the harsh reality that people are suffering on a daily basis while waiting for a transplant, and organs are a scarce resource. We need to be very practical and logical when trying to increase access to life- saving organs. Ensuring that we secure organs from those that want to donate is critical.
Family discussions around end-of-life care are crucial, but the choices of family members and other surrogates should not be elevated over the individual’s choice. Organ donation is a courageous and altruistic act. For those who are brave enough to come forward and decide to do it, their autonomy should be celebrated and protected.
Courtney Sas, MSW, MBE, (@CourtneySas) is a clinical social worker with Masters in Bioethics who is an adjunct lecturer at the University of Toronto Faculty of Social Work and a member of The Hastings Center’s advisory council. Michael Sklar, MD, is an assistant professor of anesthesia at the University of Toronto and practices critical care medicine.
Courtney and Michael, thank you for this thoughtful commentary on an important topic that is not always discussed or acknowledged. My one additional thought is that one of the differences in these cases is that patients who proceed with MAID have their autonomous wishes confirmed shortly prior to proceeding, often with family present/involved to hear and acknowledge them. In contrast, it is unclear to me how many people who state a desire to donate organs (e.g. on a driver’s license) discuss these preferences with their family in a meaningful way. I have also seen patients in the ICU make medical choices that reflect their families’ values, rather than their own, because of values around relational harmony etc. So, in the case where a family might end up with prolonged or complicated grief if organ donation proceeds when they wish it would not, it is plausible that a capable patient might change their mind (of course, we will usually never know because the patient is incapable at the time the decision must be made). We also know that preferences are not static, which is why an SDM’s statement regarding verbally expressed wishes can override older advanced planning documents if we are confident that the SDM is employing appropriate substituted judgement. I agree that the default should be to adhere to a patient’s prior declaration to donate, and I also think there is an argument to be made that informing families rather than asking if there are prior stated wishes may lessen the emotional burden of decision-making. However I think it is important to acknowledge the relational ethics involved in these complicated situations, particularly in multicultural settings or those where there are populations that hold significant mistrust of the medical system. In those cases, proceeding against strongly held family wishes may further damage trust within those communities.
I found this systematic review from 2022 to be interesting as well, as it discusses public attitudes towards this ethical issue: Molina-Pérez A, Delgado J, Frunza M, Morgan M, Randhawa G, de Wijdeven JR-V, et al. Should the family have a role in deceased organ donation decision-making? A systematic review of public knowledge and attitudes towards organ procurement policies in Europe. Transplantation Reviews. 2022;36(1):100673.
Thanks again for your thoughtful commentary and allowing me to contribute to the discussion.
The authors believe that Canada is moving in the right direction with its respect for patient autonomy by allowing organ donation after MAiD, and that this respect should be granted to all patients. I cannot say whether or not this is the right direction morally, as that is a metaphysical question. What is clear to me, though, and this is a sociological-historical observation, is that an organ-greedy system would be inclined to embrace a corresponding ethic – one that would strive to remove all obstacles to donation, regardless of the impact on the donor’s autonomy. Thus, for example, to increase donation from people who request Maid it would embrace the ideology of exclusive and absolute respect for their autonomy. By contrast, to increase deceased donation it would implement a fictitious opt-out system, which tramples over the autonomy of those who would have declined, but didn’t. If we really want to respect people, we should first ask ourselves what we could do for them, not what we could do for us.
The author cites that through Canada’s MAID program, participants can choose to become organ donors without concern for their wishes being disregarded unlike the general Canadian population whose family members can refuse to carry out their loved one’s wishes. According to Health Canada’s Third annual report on Medical Assistance in Dying in Canada 2021, only 219 (2.2%) of MAID participant deaths were classified as not reasonably foreseeable (non-RFND), while 80.7% of participants had received palliative care prior to receiving MAID. This raises questions of how many individuals would be medically eligible as organ donors, given their preexisting and in many cases terminal conditions. Perhaps as the program expands eligibility criteria for non-RFND recipients, the number of eligible donors will rise.
Legislating away family rights over organ donation would be a lengthy and divisive process, which would likely not increase the availability of organs that are desperately needed. Polarizing the issue of organ donation through terminating family consent, could damage the existing popular census in support of organ donation among patients and families, resulting in fewer donors. Bias does exist in the general population and includes the misconception that providers will not do everything possible to save a patient if they calculate that a person’s organs are more likely to extend the life of a patient awaiting a transplant, than they would in a critically ill but still living body of a potential donor. While this belief is false, the fear behind it needs to be addressed. The goal should be to increase organ availability through voluntary participation and strict ethical guidelines, and this is best achieved through public education campaigns that provide evidence-based information which address existing misconceptions.
I work and live in the United States, where Medical Aid in Dying is not consistently accepted practiced or legislated across the country, or even in the 10 states where it is legal. Acceptance of organ donation, and the criteria under which it should occur, also vary by state, creating a patchwork of confusion confounding an already complex topic. Like many decisions that occur at the end of life, the decision to donate organs is best made outside the emotional immediacy of a crisis or terminal event. The authors point out how respect for an individual’s preference may be better safeguarded in organ donation after MAiD, as a calm interactive long thought process comes to its intended conclusion. In many other situations the context and timing of the decision to donate organ is not afforded the same interactive and inclusive consideration. A person may make the decision to donate but not discuss or explain it to those that will be consulted at the time of donation. It is generally agreed that protecting a person’s autonomous decision to donate is of paramount importance and should supersede the family’s preference. The conflict, however, that results from not having a dynamic, intentional conversation over time, has associated harm to family, provider and of course, to potential recipients. One way to mitigate this tension is to have the conversation earlier and more often. Conversations about death, dying and donation should occur as early as possible. I would argue these conversations can occur in age appropriate ways and should be part of elementary school curricula. As an experience shared by all of humanity at all ages, dying is an appropriate topic for institutions designed to prepare young people for adulthood to cover. In a culture that ignores, avoids, or denies death, grief and all things related to dying, we create some of the crises faced at the end of life. By normalizing the process, and the conversation, of dying, we have an opportunity mitigate the tension that hampers decision making at the end of life. Age and culturally appropriate curricula around death, dying and donation have been developed but are underutilized in this country, despite children of all ages being exposed to death and dying through violence, suicide, illness, and natural end of life. Older children are appropriate for discussions around organ donation. Certainly if you drive a car, donation should be addressed (according to AAA drivers 25-34 years old are the most likely to die in a motor vehicle accident in 32/50 states, followed by drivers 16-24 years old). The process to making autonomous decisions should include normalization, time, education and practice.
Friesen H, Harrison J, Peters M, Epp D, McPherson N. Death education for children and young people in public schools. Int J Palliat Nurs. 2020 Oct 2;26(7):332-335.
Colette A. McAfee, Timothy R. Jordan, Derek Cegelka, Mounika Polavarapu, Amy Wotring, Victoria R. Wagner-Greene & Zena Hamdan (2022) COVID-19 brings a new urgency for advance care planning: Implications of death education, Death Studies, 46:1, 91-96
https://www.autoinsurance.org/age-groups-fatal-crashes/
I live in Denmark where euthanasia and assisted suicide is forbidden by law. A stance that I personally find to be a potential violation of individual autonomy. Denmark does however have a good system in place for organ donation. All Danish citizens can register as an organ donor online through the Danish Health Authority’s official website or through other authorized platforms. The online registration process is straightforward and allows one to indicate consent to be an organ donor. It is also possible to indicate which organs one is willing to donate and most significantly, it is possible to grant posthumous permission for loved ones to make changes to their organ donation choices. If permission is not given, the decision to donate organs cannot be overridden by family members or other substitute decision-makers.
The organ transplant waiting list is often distressingly long, underscoring the urgency of securing organs for those in need. While it is unquestionably vital to consider the feelings and perspectives of loved ones during end-of-life care discussions, I do believe that upholding individual autonomy should be the paramount factor in this process. Everyone has the right to make irrevocable decisions about their own body whether they are in or outside the MAiD process. I think Canada is taking big steps in the right direction with its respect for patient autonomy by allowing MAiD and by providing an online database for patients to record their advance directives with organ donation decisions. Perhaps by adding the option of giving family or loved-one’s permission to override they could further fortify the foundation of individual autonomy in healthcare decisions.
Hello everyone,
I’m excited to engage in this forum discussion as it delves into a riveting topic that lies at the heart of ethical dilemmas in healthcare law and bioethics—death and dying. As a nurse working in a medical intensive care unit (MICU) licensed in New York City, I find this subject to hold profound significance for me both in theory and practice. Reflecting from a US perspective, it’s evident that we still have ground to cover compared to Canada’s approach to Medical Aid in Dying (MAID) within the healthcare system, especially considering our pursuit of patient-centered care.
In my Bioethics course, I’ve been studying the crucial role of autonomy in healthcare decisions. This principle, along with beneficence, nonmaleficence, and justice, is a cornerstone of bioethics. I strive to apply these principles in my work, understanding their definitions and implications. The Stanford Encyclopedia of Philosophy (2020) underscores the role of decision-making capacity (DMC) in upholding patient autonomy, particularly in complex situations like MAID and organ donation.
Professor Michael Perlin’s concept of therapeutic jurisprudence (TJ) offers a valuable perspective on this matter. TJ underscores the psychological impact of legal processes and emphasizes the importance of laws’ therapeutic effects while respecting individual dignity and autonomy. Applying TJ to MAID and organ donation, it’s clear that while some therapeutic benefits exist, there’s a notable gap in respecting autonomy, especially for patients not choosing MAID.
Further exploration through studies like Greene and Cohen’s neuroscience research and H.L.A Hart’s discussions on positivism sheds light on the need for a legal model that prioritizes therapeutic outcomes and individual autonomy. As we reflect on cases like Terri Schiavo’s and others, it’s evident that respecting patient autonomy is paramount, even in emotionally charged situations.
During our course discussions, we revisited the Hippocratic Oath and the principle of “not harm,” grappling with the complexities of end-of-life care. Balancing interventions that may cause harm with those that alleviate suffering and preserve dignity is a continual challenge. The principle of autonomy guides us in determining who should make final decisions—ideally, the patient, as long as they possess decisional capacity.
In considering a way forward, I propose a model that draws from Canada’s approach to MAID while ensuring the autonomy of all patients, regardless of their MAID choice, in organ donation decisions. This could be achieved through public education on decisional capacity, training healthcare professionals in end-of-life conversations, and establishing specialized health courts, as suggested by Perlin. These steps could effectively address disputes and uphold the principles of therapeutic jurisprudence.
Furthermore, shifting our mindset towards accepting death as a natural part of life and fostering open conversations around it can significantly impact decision-making capacity at the end of life. Empowering patients and families to engage confidently in these discussions is critical to respecting their wishes.
I look forward to our continued dialogue on this vital topic.